Sign in here if you were told your baby wasn't tongue tied, only to find out later that he/she actually was.

(192 Posts)
mawbroon Tue 11-Sep-12 11:52:50

Me for one. Except he was 6 by this time.

And I was told it by the paed surgeon who used to run the tongue tie clinic.

FFS angry

Kytie Tue 09-Apr-13 23:28:39

Does having lip tie snipped help with latch and bfeastfeeding and does anyone know if N H s will do operation and wondering can they reattach like tonguetied can ? Thankyou

Kytie Tue 09-Apr-13 23:29:39

Does having lip tie snipped help with latch and bfeastfeeding and does anyone know if N H s will do operation and wondering can they reattach like tonguetied can ? Thankyou

Kytie Tue 09-Apr-13 23:38:36

Can a lip tie be snipped by the NHS and wondering if they can reattach like tonguetied can ? do they affect bfeastfeeding a swell I think I wll have it snipped if it does affect too .thankyou

Kytie Wed 10-Apr-13 09:50:01

Hi think my baby is lip tied as well as tonguetied does lip tied have big impact with breast fee ding as T T been cut .may have lip tied cut too and wondering does anyone know if NHS will do this procedure as I paid privately for T T...? Thankyou

Shellywelly1973 Fri 12-Apr-13 00:23:50

Dc5 still has tt & a lip tie. He's 4 now. No one listened & i ended up expressing for weeks until supply dried up.

When his teeth grew down the lip tie was so bad it extends down between his front teeth. He's currently been observed at Eastmans Dental Hospital. Lip tie generally isn't cut unlike tt.

Ds has no speech problems & the lip tie, though not nice to look at, causes no problems now.

Kytie Fri 12-Apr-13 23:12:02

Thankyou shelleywelly it does seem a shame they don't divide lip ties like tonguetied as I have read it contributes to a poor latch for a baby to breast feed as a T T can . And affecting formation of teeth .be interesting to find out if they do cut in Britain and where as I would have it done my baby has a severe lip tie .they do it in America at the shame time when a T T cut .thankyou Kate.

10oclocknews Sat 13-Apr-13 23:32:29

Anyone got any experiences of TT and bottlefeeding?? My DD is 4 months old, but feeding her has always been an issue. She has never fed comfortably. Dr said it was a lactose intolerance at 9wks old and prescribed colief. Didn't see much improvement apart from poohing better. Went back at 11 wks and Dr said silent reflux and prescribed Gaviscon. I definately saw an improvement in her nature and she was much calmer and more relaxed between feeds and seemed generally happier. However, she still fusses when feeding.
She will cry for her bottle and shows all the signs she wants it, but after a few sucks she pulls off the bottle then tries again and so on and so on. She may get a little rhythm going, but then stops and chews the teat. She seems like she is sucking really hard too and makes a clicking sound a lot and sucks off the teat (hard to explain really but its like if you suck your cheeks in really hard and do kissy lips, it will eventually make a kissy sound and your lips will pop open????) I have changed to faster teats and tried variflow but it hasn't made a difference.
It can take an hour for her to have 7oz. I have to give her lots of rests in between and sucks of her dummy to alay her frustrations and stop her going into meltdown. I thought maybe she isn't very hungry, but she even does this with her first bottle of the day after 8 hours of sleep??.
Im not sure if she is just fussy or if there is an underlying reason. She can stick her tongue out and is putting on weight perfectly. TT crossed my mind a few weeks ago, but not sure if her symptoms are TT indicators??? DD is my second child and DS1 fed brilliantly, so this is all new. My mum feels she is just fussy, but I can't help thinking there is more to it? She id perfectly healthy but I don't feel feeding should be stressful??? Any thoughts?

Kytie Sun 14-Apr-13 22:33:42

Hi 10 o'clock I think you may need baby to be checked for T T seems very similar to my baby who's got T T although I'm bfeastfeeding they do lose there latch on and of and feeding is hard work .i do sympathise and feeding is so stressful with a T T .hope things get easier for you

Lala83 Sat 20-Apr-13 16:28:31

I never ever write on here but thought my story may benefit someone.

Had same problem as most. RVI hospital didn't even check baby feeding, no HV came until I called them after two weeks as my notes were 'on the fax machine', they missed the tongue tie as didn't even check his mouth. I got mastitis and had a near hole on one nipple. When I asked about it at the 12 week check, HV said she'd checked last time and it was fine and definitely no tie. Eventually through my own suspicions I went to doc who said yes it was tied and referred me to specialist. By time of specialist visit he was exactly 8 months old. They wouldn't cut at that age without GA and said it wasn't necessary for speech but I kept pushing and got agreement to not need any more referral but just to phone back at 12 months for an appointment. He is now 15 months (waited on waiting list since 12 months) and got it done yesterday. Went in at 7.45, in operating room at 9 under GA. In recovery room 5 mins later. Dr said it is barely an operation as it is such a quick snip. By 9.20 he was awake again, had a feed, then by 9.45 running round and eating quavers and banana! Not bothered at all! His breast feeding now is a little more with tongue, no idea yet how it has affected language and oral hygiene and I may never know!

Things I have learnt for next time via the Internet!
- not proven but anecdotally TT is hereditary
- TT can be spotted by bobbing on breast, squirting milk out of sides of mouth, very sore nipples (one of the many ways for this however!), heart shaped tongue and not sticking it out to copy mummy.
- it probably won't effect speech, but it can. I thought the relatively minor risk of 20 mins under GA at his age was better than a big speech problem or issues with oral hygiene, ice creams etc later in life when the skin is thicker and the op is much more painful. NHS and NICE don't see it like this, they like to take the wait and see approach. That's ok if you don't mind the speech therapy involved. No one could tell me how our Italian child would cope with rolling his R's.
- kissing seems to be a big deal to a lot of people who have TT and many people seem to wish their parents had just done it for them when they were little.
- the NHS tend to under diagnose it. Bearing in mind something like 1 in 10 have this condition.
- your max deadline without GA is 8 months but I really encourage you to push push push to have this done as soon as you spot it. Otherwise you have to wait until after 12 months and have it done under GA
- if you have trouble and it is taking too long, there are lots of midwives and places who offer this privately for about 120 quid. Worth it to not have to put your child under GA later!
IMHO everyone should have the right to stick out their tongue!

whoopwhoopbib Sun 21-Apr-13 07:28:26

I have posted before about my dd's tt which was missed by all of the midwives at the hospital, we stayed in for 3 days so we saw quite a few, 5 community midwives and 3 bf peer supporters, one of whom people rave about but I found her to be the most condescending cow imaginable!

At a bf group recently one of the nursery nurses went on some further training with midwives and they were told they were over refering to the tt clinic!! This makes me feel so so angry because it is hard enough to get anyone to notice the tt let alone have them now think they shouldn't refer.

Luckily we managed to get dd's snipped at 4 weeks but we had to contact people ourselves. I still feel very sad and angry even after 13 months so I think I might leave this thread for today and pop back when I feel up to reading it smile .

u32ng Mon 22-Apr-13 07:50:45

sad My DS is 11wks and I am thinking he has tongue tie that's been missed, especially reading what everyone else is saying on here.
I was told by MW & HV no tongue tie even though I asked about it;
I was in hospital for 4 days after his birth because of latching issues & he was more of a 'chomper' which resulted in mashed nipples for me!
He also would fall asleep within minutes of going on the breast;
Now he smiles more I can see he has a small heart shaped tip.

I was expressing for weeks (without much success) on the hope of being able to pick up bf later, but he started preferring the bottle (no surprise if it was such hard work at the boob!) so I gave up 3 weeks ago sad. I'm going to pursue this again now, and if it turns out that he does have tongue tie after all I'm going to be so disappointed!! (And peed off!)

whoopwhoopbib Mon 22-Apr-13 20:33:27

u32ng that's exactly what my dd did when she fed, she would chew rather than suck which was agony for me. My hv said she would refer my dd but I already had an appointment to see someone so that might be worth a try.

If I was in that situation again I would ask every person possible to refer me but without telling them that I had already asked other people iyswim.

I hope you manage to get it sorted x

HeadFairy Mon 22-Apr-13 20:42:16

My ds had terrible trouble latching, I had all the classic signs. Really long feeds (2hours plus) and ds not gaining weight (he went from 7lbs7 at birth to 6lbs13 and stayed there for 6 weeks), lipstick shaped nipple with white patches after feeding, terrible agonising pain. Somehow I was so grimly determined so I hung on, expressing to top up (I got that bit right at least, hired a super duper double pump at great expense but regularly got 20-30oz a day out!). I don't think his tongue tie was that extreme because after about 4 months he was back on track. Feeds were always long, but his latch improved immeasureably.

I was told that if a tongue tie wasn't too extreme they could stretch eventually and self correct. I don't know if that's right, but that's what I assumed happened to ds.

With dd (born in a different hospital - one with much better post natal care and bf support) she was diagnosed with TT on her second day (I was in for a cs) and corrected on day 8. The difference was incredible. They took her away for a minute, brought her back with a bit of gauze in her mouth and asked me to feed her. She instantly latched and it was completely comfortable, she managed a whole feed in about 5 minutes and we never looked back.

u32ng Tue 23-Apr-13 02:02:52

Wow.

This is going to sound terrible, but already want a DC2 so that I can have another go at breastfeeding. I thought I'd knew it all about bf before DS but tongue tie wasn't on my radar. Now I know & it will be first consideration if I ever have the same problems again!

Kytie Tue 23-Apr-13 23:15:05

My baby tonguetied was cut three times and the fibres still reattached but thinly enough to stretch and with the help of paying for cranial oesthopath which I would highly recommend .at the age of five months he breast feeds lovely .i will never forget those first stressful months of forever feeding .i just couldn't ever imagine not feeding my baby I never knew how much a tonguetie can interfere with bfeastfeeding as my 3 other children feed lovely with no problems .all the best k t x

Mamasbelle Tue 18-Jun-13 23:40:16

This is the Facebook address of the group : https://www.facebook.com/groups/tonguetiebabies and it's page: https://www.facebook.com/TongueTieBabies for anyone searching for info, practitioners etc. Lots of info there about upper lip tie which isn't really recognised here. HTH

Grannyapple Sat 03-Aug-13 19:41:56

Hi...I've just found this thread.. DS had a server posterior tongue tie (diagnosed at birth)...snipped day 10 at kings college hospital in London..but milk supply not great..mix fed til 7 wks them fully switched to formula.

I've just had DD on Tuesday & I asked for it to be checked straight away..was told "it's not a sever one so should be ok" but I asked for specialist bf support..wasn't forthcoming by 4pm the next day in hosp, so I asked to be discharged. Have found a lovely private lactation consultant who came round to house today to snip DD's TT..hers is a severe anterior one. This is day 4 so milk had just come in, but I'm noticing a great difference already... Trick is to get it corrected as early as possible & as close to milk coming too.. The LC does some of the clinics at Kings too..

She says research suggests a link with TT & folic acid supplements, but the benefits of FA far outweigh the cons in these supplements so advice unlikely to change. Also possible hereditary link (from fathers side) too...

If anyone is in south east England & London area & would like details of LC for the TT, pm me.

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